Loving them for who they are

LAMOILLE — Raising a child with Down Syndrome provides you with the unique opportunity to love someone and appreciate them just as they are.

Keir and Kelly Sexton of rural LaMoille have learned that first hand while raising Max, 9, and Macy, 11 months, who have Down Syndrome, as well as their two other children, Chase, 8, and Katie, 4.

 Their journey through raising Max and Macy has been marked with ups and downs and has left them with a lot of unanswered questions after they were born when Kelly was 25 and 35. The probability of a woman having a child with Down Syndrome in her 20s is about 1 in 1,000, while the probability at age 40 is 1 in 60. Kelly said they do not have a history of Down Syndrome in their family.

“With Max, we didn’t have any of the testing done. That was my first child. So it was a shock; we found out the night he was born. We were very surprised and just weren’t expecting it at all,” she said sitting in the family room of their home.

The family was forced to recover from the first blow to deal with the second — Max was also diagnosed with Hirschsprungs disease, an enlargement of the colon due to a bowel obstruction. He underwent surgeries shortly after his birth and eventually had his large intestine removed.

Today, Max is in third grade but has fallen a little behind in school due to so many surgeries and hospitalizations for dehydration and inflammation. He also had surgery on his knee to prevent his knee cap from coming out of place.

“He’s been sick now for two and a half months, so he has a lot of stomach problems with inflammation and pain and a sore bottom; he’s really sore inside and out. It’s been up and down. But it’s all he’s ever known,” she said.

Max had an ileostomy bag to catch his fluids and stools for a year and one-half and didn’t begin walking until he was 5, largely due to his sickness.

“If he doesn’t get better on this new medicine he’s on, he might have to have some more surgeries, so he can heal ... It’s been awful. I’ve always said the Hirschsprungs disease has been by far, way harder to handle,” she said.

After having Chase and Katie, the couple decided to have a fourth child, Macy, and believed everything would be all right and didn’t have any tests done for Down Syndrome.

“We went through kind of the same things; we knew a lot more about it at that time. But, you go through the emotions of being surprised and sad and questioning why,” she said.

The family was relieved to learn Macy was healthy, and she has since traveled a different, easier path than her older brother. Though she has yet to begin walking, she has begun to sit up.

“Her personality, you can’t help but love her. She’s just happy-go-lucky all the time. She’s just very, very happy and easy going for the most part. She’s very spoiled and likes to be held a lot. Right now she’s pretty alert, she just goes with it,” Kelly said smiling.

Max receives physical, occupational and speech therapy at school while Macy receives physical therapy, and a developmental therapist works with her at the family’s home.

Max is now a happy, affectionate child who loves to play outside with his yellow lab, Jack, while Macy adores her big sister, Katie.

After the shock of having two children with Down Syndrome, the family has come to appreciate Max and Macy for who they are, and wouldn’t change a thing.

“Life is so short, just appreciate who they are. You can’t help loving them. Yes, they are going to learn a little bit slower, or a little less of things, but they are going to love you so much back, so just enjoy them,” she said.

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